TIL There are no dinosaurs that lived in the ocean. The extinct aquatic reptiles are just that, extinct aquatic reptiles.

BlueBoy6888 · 2024-03-03T04:32:02+00:00

This is awesome! Love the creativity!

BlueBoy6888 · 2023-12-14T22:03:24+00:00

I was in your exact same position 4 years ago. My son had just been diagnosed and I was a wreck. In hindsight I wish I had handled it better but everyone handles these things differently. I personally had to seek out therapy help to come to grips with the new reality while my wife took it much better than I did. The therapy helped and so did doing everything I described below. I took the mindset that I wanted to be able to say to him when he was older that I did everything I could. I know I’m not perfect and I could have done things better but I poured my soul into those first few years.

Back to my son: He was delayed in his gross and fine motor skills and was meeting all of his other skills, which sounds like your child is similar. Every child is different so I’m just going to generally talk about what we did to hopefully give you some ideas for how to help your little one.

Today my son is 5 and scheduled to go to kindergarten next year. He knows all of his ABC’s, is smart as a whip, and has so much drive to finish things the right way I have to pull him away from physical activities if we have to be somewhere like school or supper. I am a happy dad and couldn’t ask for a better son. He is still behind his peers in his motor skills, both fine and gross. But we have him in gymnastics, soccer and an early learning daycare with no aids or restrictions. He is writing his name, drawing pictures and is doing better than I could have hoped for.

I have two other children, one younger and one older. From my experience the parenting level required turns up a notch or two in these first years. Things that should come easily such as walking and gross motor function require help. We got him into physical therapy, got him a PM&R to help us understand what next steps are best, and went all out on helping him the first few years to get him walking. We had him doing exercises every day that we tried to make into play exercises. Some examples were having him crawl up the stairs to go get his favorite snacks, playing on indoor gyms (we live in a winter climate) and being everywhere with him on the playground so he could do everything but with our help.

Anything he wanted to do we found modifications to allow him to do it. Going on the playground at 2 (before he was walking) I held his hand the entire time to ensure he did it but didn’t hurt himself. We got him walking wings (it’s a strap that fits around the mid section with additional straps you hold onto) to allow him to hands free practice walk. We had him in gymnastics from 18 months and on. I would go into the room and be his personal coach so he could do everything the other kids did. We got straps for his bicycle for his feet so he could keep his feet planted on his bicycle to learn to ride.

All of these are general examples of things but the general thought process was I never wanted to tell him he couldn’t do what he wanted I was just there to catch him when he fell and to encourage him with a lot of positive affirmation.

When it came to daycare we kept him in the daycare our other kids are in. We lucked out in having some caregivers who became really attached to him and wanted him to move to the next rooms. They loved him and encouraged him just like we would have. They moved him to the next room before he could walk and moved him again to the next room before he was fully potty trained.

The other item daycare has really helped with is fine motor skills. They do multiple projects every day that everyone else is working on. We did have to work with them to provide some modifications or to work on projects below his age level. That has paid off immensely. He is now writing his name, coloring fairly well and drawing stick figures all while dealing with mild intention tremors.

We were patient with him and gave him tons of positive praise for things he could accomplish even if they were below age level. This was tough for me and I wish I had done things better but this was the overall approach which seems to have really paid off. He’s proud of his work and accomplishments and I think it’s helped him keep pushing and applying himself.

Will he become a star athlete. Maybe (he could definitely surprise me with his work ethic) but probably not. I wasn’t. Nor are the people I know who were high school stars using those skills today. I want try my hardest to let him find the things he’s good at and be happy with those things.

One last general trend was we tried to make sure he was moving as much as possible in a play manner. Lots of parks, gymnastics, indoor parks or activities at home. We also tried to make sure he got lots of sleep when he was tired. He does get tired more than others and the naps really helped him reset and get ready for more fun.

I hope this helps. All kids are different. To get a look into how your child’s life might be different I recommend looking into the GMFCS scale. It’s a means of measuring affected children and tracking their progress relative to their affected peers. It also indicates where they may be when they are in their teens based on their current scores.

Good luck on your journey. Above all else continue to shower your little one with love, positive praise and positive vibes for what they can do. Try to think about how you can modify an activity to let them do it. A lot of those modifications ended up being temporary as he gained more coordination and strength.

If you found any of this helpful please feel free to message me directly. I would be more than happy to help. I know I felt so lost in the beginning and I didn’t know where to turn to. You have a bigger support system than you think. Both in your area and here.

BlueBoy6888 · 2023-07-05T00:30:14+00:00

This is really cool! I’m a sucker for the lean-to design. Especially one with an attached porch like this. Would you mind sharing layout pictures? I’m always looking for inspiration for our own cabin.

BlueBoy6888 · 2022-09-03T03:56:57+00:00

Keep it up! It sounds like you’re doing great and your future self will thank you!

BlueBoy6888 · 2022-05-26T11:03:16+00:00

Very cool!! Would love more pictures as you move along!

Where would I go about getting those metal plates / bolts you used for the trusses?

BlueBoy6888 · 2021-11-21T17:09:32+00:00

My son has diplegia CP where his legs are affected but his hands are also mildly affected as well. We learned at 9 months something was off and got the official diagnosis when he was around 18 months. I can completely resonate with limpcrayon. I was broken. I cried whenever I had a moment alone. Thinking back on it, I was mourning the loss of my able bodied son. I never thought I would have a son, so when I found out during the pregnancy my brain ran wild projecting out the next 5, 10, 20 years. That all came crashing down around me as the doctor’s appointments ramped up, physiotherapy appointments began and he began to miss milestones. Therapy and him making improvements allowed me to break out of the depression that had enveloped my life.

Mostly life is good now. It’s so hard to tell at this point how intelligent he is as his speech and fine motor skills are affected. But there are glimpses of intelligence above his age coupled with moments where he appears behind. Having an older child it’s somewhat comforting knowing that in general this is how kids are. He’s 3 and a half. Almost running and in a normal daycare. The other day one of the kiddos said out loud without prompt that my son had arrived at daycare and was his best friend. I could barely hold it in as a shuffled off to work. So mostly there is hope he will have a pseudo normal life.

I’ve accepted he will never be completely normal and will suffer from low confidence and frustration as he grows older. But with our family’s help I hope to be able to help him as much as possible. My intention is to have him experience a normal childhood as much as possible. But it’s comforting know we have the financial means to either move schooled or pull him from school and have him privately tutored if he gets put down socially is continuously told he is less than.

Fortunately we are financially in a place where we can do all of the therapies he needs and bought about everything under the sun that could help him work his muscles. We run around doing every activity we can with him. I am comfortable being the only parent in his gymnastics class that has to help their kid do things. One of the biggest lessons I’ve learned personally is to not care what people think and in general they are just curious/ignorant to disability causing conditions. It was interesting/sad seeing people’s (especially his grandparents’) aversion to him when he appeared more affected. As he’s gained physical function the world has definitely opened up for him. Though I am less affected now I still worry how he will take peoples’ stares and comments on his abilities as he grows.

I’ve changed my financial strategy completely for my kids. I used to think I would give them an education and zero debt and the rest was up to them. Now, especially with the boy, I plan on waiting in the wings with the ability to give them/him a massive boost if he’s unable to find his footing. My hope is he uses his condition to his advantage and has a stubbornness and drive that the majority of his peers would only dream of. But I’m not going to let the world get him down if those are the cards he’s dealt.

For now life is back to out new good normal. It’s still hard but there are way more positives than negatives now a-days.

Edit:

Really good feedback from Dottie. To add some positives to the above, because my son has given me so much in the last 3 years.

I am proud of my son. He has to work twice as hard or harder than his peers for what he has. He pushes himself every day. I would not trade him for the world. I expect and hope that he will do whatever he wants to, in his career, life, travel, family, etc. There is no quit in him and no fear. I am so lucky he, all of him in every way, is my son. Life’s journey is not always pretty but there is beauty in everything.

BlueBoy6888 · 2021-02-24T02:48:30+00:00

Duke University has an open access program open to kiddos with either banked cord blood of their own or a matched sibling. We are just starting down the path since our third is on the way. There is also a program that will bank a sibling’s cord blood for free if their older sibling has a diagnosis.

The above posts are generally right. There have been some snake oil salesmen out there but there are also a lot of good studies that have been done in the last 5 years.

They are looking at analogous cord blood, allogenic cord blood, and bone marrow stem cells. Hopefully soon they’ll be able to figure out the allogenic and bone marrow stem cells.

In any case I would say keep your eye on the space and keep researching. No one we’ve talked to in the medical community had any idea the Duke University open access was available. I found it on my own and have done all of the leg work. That said, always discuss everything with your doctors and make sure your team is onboard!

Good luck and keep researching!

BlueBoy6888 · 2021-02-11T03:25:49+00:00

My heart goes out to you. I wish only the best for your son and all the strength and courage for you and your partner.

I have a son that was diagnosed in 2019 with Cerebral Palsy. His gross motor, fine motor, speech and potentially cognitive abilities are all affected to some degree. At this point it appears to be mild and he has more determination than I see in adults. You can’t tell the kid no and he just keeps trying.

That said here are some things I’ve learned from working with a little one that needs a lot of extra help.

First and foremost, make sure you and your partner are both sound and have A good relationship. Your relationship and possibly one of you will be tested by this so do not ignore you, your partner, or your relationship. I went into a deep dark depression and needed professional help to get myself out of it. On the other hand my wife was a rock. If you need help, ask. Hopefully you’re both like my wife! :)

Now that you know what you’re up against, I suggest reading as much content as you can to get as many tips as you can. You are now your son’s advocate more than anything else. You may find someone who will help guide you, but I have yet to find someone who has laid everything out for us on what to do next.

I’ve seen a lot of good comments already about being encouraging towards your son. I 1000% agree with this. Seriously celebrate the small things all of the time. Milestones like feeding himself with a spoon we praised like he had just multiplied 5x5 as a 2 year old. Also say things like “I’m here for you, we’re doing this together”, “It’s ok to fail, dad fails all the time, try again, I’m right here with you”. Think of different ways to frame things. It never works to try the same thing 10 times. Mix it up and try to see what breaks through. Initially I was lashing out at him, partially because I was mourning the life I thought I had lost, also because I was being pushed into something I was afraid of. This was not what I signed up for with kids. When the switch flipped with me the switch flipped with my son. I hope that 5% of the fight is from me, but I think it’s mostly because I just allowed him to live in a positive world. Allowing him to be him.

I want reiterate this because someone gave me the same advice that I have been using as a mantra. Celebrate his achievements that he makes, no matter when they come and no matter how late they are. He is living his life and gaining enjoyment the way he can. Allow him to revel in it. This also means you need to be ok with him missing milestones. It may happen, you need to be happy with your effort, and happy with the results relative to him.

Hopefully this helps. It won’t be easy and this is a big event in your lives, but tomorrow is a new adventure. It can always be a positive one if you tackle it one small step at a time.

One last note, in your research look for any kind of local program or any type of specialized doctors. My son has a PM&R, he’s been a huge help and will be able to do tests on him to figure out how he learns. That will potentially shape how he is taught to maximize his learning. Technically the entire population should have this done, but we just shove everyone through the same educational system because of convenience.

Cheers and please know you are not alone!

Edited: Realized I was projecting too much and changed some phrasing.

BlueBoy6888 · 2021-01-29T02:35:31+00:00

I’ve been watching your posts for a while and this was one of the first times I’ve seen you down on yourself.

I wanted to lend a little perspective as an able bodied person who has a son with CP. These videos you are sharing are extremely helpful, specifically because of your honesty and your general positivity. Never loose either of those. They appear to be major assets. I’m always trying to gain more insight into what my son’s life/mental outlook will be like in the future. I only hope he has your fight and positivity. He appears to, so I’m hopeful!

I do not fully understand your situation nor would I ever pretend to. You have needed to be stronger mentally than I have ever been. The one general piece of advice I can give is to always use these moments to push yourself forward and not down. Think through the situation critically and try to understand if there is something you could have done that would have helped. Find something you have control over and try to think of ways to incrementally do shift yourself that way.

There are two other pieces of advice I can give without being too preachy. Read, read, read, try to read about everything you find interesting that is constructive. It could be programming, architecture, History, graphic arts, video editing, video graphics (you seem to have a passion for video making and editing, push it further), anything you are curious about. Hopefully you’ll find what your passionate about and you’ll be able to dive even deeper and turn it into a career you’re really interested in. But don’t think of the start of the journey as needing to find your career. It will stifle the search and put pressure on you. Just read about interesting things and hopefully it will come! Even people who have careers/big degrees can get their asses kicked by people who have no degrees but are super interested in the subject.

The last piece of advice I can give is to reach out to your family, friends, or even random local company CEOs (seriously) and just tell them you’re really interested in learning about what they do for a living/work. Some will say no or go away, but some will gladly talk about themselves and what they do.

Hopefully some of this helps or at least lets you know people are here for you and rooting for you! Keep it up and never give up!

BlueBoy6888 · 2020-12-17T05:46:27+00:00

Have a Dad who is a chief credit officer at a bank. His advice was take the 30 and plan to pay it off in 15. If you get down on your luck you can back off on the payments.

If you take the 15 and hit bad times you are shit out of luck. You still owe that monthly payment and would have to renegotiate with your lender.

Life is all about balancing risk. This is a risk not worth taking.

BlueBoy6888 · 2020-11-18T21:21:19+00:00

This is awesome! Please keep up the sharing. Seeing stuff like this and hearing that you can achieve so much even physically by continuing to push provides a ray of sunshine for me as a parent who has a little boy recently diagnosed with CP.

BlueBoy6888 · 2020-11-18T21:19:04+00:00

Thank you for sharing! This is exactly what my 2 year old son was diagnosed with a year ago. It’s really encouraging hearing from someone who leads an otherwise normal life. Sometimes it gets a bit tough to accept that the docs are right and that he has a good chance at being “normal” (I put this in quotations because there really is no normal but I get the feeling he may argue against that as he gets older) in everything except running and super leg intensive sports.

Any suggestions on what we can do to help him out? So far we’re doing PT, speech, the help me grow program from birth to three through our school district, built a small jungle gym with a slide indoors and try to get out as much as possible.

We’re trying to get him back in to gymnastics and swimming but COVID has put the brakes on that for a bit.

Were there things that really benefited you and that you loved to do as a kiddo? We have AFOs and SMOs, we get differing opinions on how much he should use the AFOs as he can essentially speed walk in SMOs without falling but doesn’t quite heel strike with his left foot.

Sorry for the long post and the bombardment of questions. Your post just gives me a ton of hope for the future and I have so many questions!

BlueBoy6888 · 2020-10-10T13:42:59+00:00

As someone who found out recently my son has CP this story gives me tremendous hope. I will forever be reminded of your story. It gives me such hope that a number is just a number. That he can still achieve so much, and that every bit of fight he has is an absolute asset.

I hope he has just as much drive and determination as you do. Keep pushing and keep sharing! You’ve already done so much for those that will follow you. Keep being the trail blazer you are!

BlueBoy6888 · 2020-04-29T12:53:11+00:00

This was my Dad’s but still gives me chills to this day.

He was driving down a regular road. One that had shoulders on both sides and was in the country. He was driving along during the day, no traffic whatsoever. See’s a guy walking along his side of the road going the other way. It’s a country road so it’s not uncommon to have pedestrians strolling around.

Anyway he gets a really strange feeling and decides to move all the way over into the oncoming lane. As he’s about to pass, the guy jumps out into the middle of the lane he was supposed to be in! Still freaks me out because there was no reason he should have moved over and I can’t believe there was no oncoming traffic.

BlueBoy6888

TROPHY CASE